Rubinstein-Taybi Syndrome Videos

The UCCEDD is excited to announce the release of ten video modules on Rubinstein-Taybi Syndrome (RTS). Nine of the modules focus on medical subspecialty care for patients with RTS and one is dedicated to families’ experiences of living a good life with RTS in their homes, schools and communities. We hope these videos will contribute to increased understanding and optimal treatment of individuals with RTS. We appreciate the time, knowledge and expertise that these medical professionals and families put into making these videos with us.

All videos can be found here.

Individual videos and links are listed below.

Developmental Pediatrics

Genetics

Ophthalmology

Orthopedics

Gastrointestinal

Neurosurgery

Anesthesiology

Psychiatry & Behavior

Growing Older

Community & Education

Information Exchange for SW Ohio First Responders and Individuals with Disabilities

We are currently looking for individuals with disabilities – specifically paralysis, and caregivers/family members to participate in an information exchange with first responders regarding Emergency Preparedness. This was initially planned to be an in-person session, however we have changed the format due to COVID19 limitations.

The goal of this exchange is for individuals with disabilities/paralysis and their caregivers to have the opportunity to ask SW Ohio first responders anything they would like to know related to their interaction with them in an emergency or other interaction. Many first responders struggle in their awareness related to individuals with special needs in these situations. I know individuals with disabilities/paralysis also have their own concerns and questions when it comes to interacting with a first responder. We want to facilitate this question and answer “session” electronically to reach as many folks as possible.

The way we are initiating this is to have participants (first responders and individual/families) type their questions into a brief 5 response survey. The process shouldn’t take longer than 10 minutes, however we would like for participants to have thoughtful, genuine and applicable questions for the first responders. Participants should not be afraid to be specific to their own needs.

INDIVIDUALS WITH DISABILITIES/PARALYSIS AND CAREGIVERS/FAMILIES who are interested in participating please click this link for additional details and to complete the questions: http://survey.constantcontact.com/survey/a07eh2yt4vjk9yesodb/start

*There is a separate link for first responders to participate in this information exchange. If you are interested please email Erica for the link.

Surveys/questions should be completed by May 31, 2020.

Thank you so much so much for your assistance with this important topic.

Sesame Street and Autism: Brothers and Sisters

Sesame Street Workshop has released some new materials aimed for young children who are siblings of children with autism.

When Julia and her brother Samuel can’t agree on who gets to play with Superpup Rose, it’s Superhero Mega Mommy to the rescue in this video short.

These worksheets help siblings explore their thoughts and feelings—and help encourage conversation about them.

This article provides talking points to help children navigate the inner workings of families and beyond.